“So many things in the book resonate: the sorrows, struggles, and challenges, as well as the guilt and despair — and, through it all, the surprising and amazing presence of love and joy — that come with being a parent of a child with a disability.” –Jim Triantafilou, Executive Director, Brampton Caledon Community Living

“...a true story in several senses ... true to life in general, true to family life in particular, and true to medicine ... a wonderful book.” –Gerald Taylor, M.D., Mississauga, Ontario

During the first few weeks after Matthew Kirk was born — brain-damaged as a result of oxygen deprivation during delivery — the doctors advised his parents, Donna and Ed Kirk, to put him in an institution, have another baby as soon as possible, and get on with their life. But what the doctors didn’t understand was that Matthew was their life. Indeed, as he grew, he would surprise everyone with his athletic good looks, spirited personality, and supreme ability to create joy and love as so many people gathered around to help him through his physical and mental struggles. Now, with the publication of this clear-eyed, laugh-inducing, and heart-tugging book, Donna Kirk recounts the story — the love story — of how she and her family found Matthew, and how he found them. Donna Kirk is also the author of short stories, which have been published in The Daily American, Ars Medica, CommuterLit, and The Quick Brown Fox. She lives with her husband, Ed, in Oakville, Ontario.

Most pregnant mothers fear the possibility of giving birth to a special needs baby. When the new-born baby shows all signs of normalcy, a huge weight is lifted from the new parents’ shoulders. In Finding Matthew by Donna Kirk, Donna Kirk’s breech birth went horribly wrong in 1970. Donna and her husband faced complicated and heart-rendering decisions over their first-born. Despite doctors’ advice, these first-time parents decided to fight for their child’s survival and right to existence.

The book strikes at the heart of parents’ dilemma whether to institutionalize a handicapped baby right from the beginning or to care for the baby at home. As Donna’s husband asked her once, “Why do you always feel guilty about everything?” That is the crux every mother has to face when a difficult dilemma forces an honest evaluation of needs and wants for the child, the mother, and the family. “The minute he walked out our door, many of the hassles and complications vanished along with him. That’s what hurt the most.”

Kirk left me wanting more information about Matthew as I too wanted to find Matthew. What kind of music did Matthew like? Did Matthew watch television? What shows did he like? How did his tastes in music and television change over the years? Did Marguerite or Beverly ever try flash cards to communicate? If he could sign for some things, couldn’t he sign other things? Did anyone ever try assisted computer programs to communicate? What did Marguerite talk to him about? How was he in church? Did he try to sing? What did he become enthused about in church?

If this book was a biography Matthew, the author should have included chapters from his father, his siblings, along with his other caregivers like Marguerite, his live-in mom for over 11 years, Beverley, Lisa, Bunmi, and Pastor Joel, his pastor for over 14 years. Many holes leaves the reader clamouring to find out more about Matthew.

Three questions troubled Donna which book clubs could explore for discussions:
1) What was going on with Matthew when he touched or “thunked” his head with his hand? The psychiatrist interpreted Matthew as hearing voices in his head. Donna, his mother didn’t think he was hearing voices; she always thought his actions indicated a headache. Could Matthew have been signaling that he had thoughts he wanted to share? What did his Marguerite think?

2) Matthew swallowed a variety of different objects over his lifetime which usually occurred after a period of restlessness and/or rage or extreme frustration. The doctors called this pica incidents or behaviours, common for people with developmental disabilities. Why did Matthew swallow? Was it a form of Matthew expressing his frustration and hopelessness? Could this be a similar behaviour to teenagers who engage in cutting? Inflicting physical pain as a sign of emotional pain and stress? Did Matthew’s pica behaviour damage the upper sphincter muscles at the top of his esophagus, that close off the windpipe, which in turn caused his later health problems?

3) What kind of mental illness did Matthew suffer from? Later in his life, Matthew expressed more anger mixed with anxiety. His doctor diagnosed him as having depression with severe anxiety, and later agitated depression. What is depression? It’s a feeling of hopeless over one’s current situation and for the future. Was Matthew bored with life, alternatively angry and frustrated? What if he had far more to say and just couldn’t express himself with the tools he had available?

With so many questions arising about Matthew’s life, the focus turns to whether this is a biography about the mother. Kirk tells of her thought processes, decisions, and experiences in helping her child into some form of independence within the maze of his mental disabilities, institutional rigidity, community out-reach, and the medical establishment. But here to, critical understanding is lost. It was a shock to learn mid-way through the book that Donna had been educated in early childhood education at a university , that her husband and her had built a house when they had three very young children, that the other two children were educated in private schools, that her mother who had supported her and Matthew so much had died 8 years before Matthew died. These are significant events in the life of a decision maker such as Donna Kirk, leaving readers with a glass only half-empty.

Finding Matthew focuses on Matthew’s pivots events from a developmentally and mentally disabled newborn, to a toddler, teenager, and adult. Donna Kirk pulls us through the painful moments as she strives to enable her son to become independent of family and finally institutional care. Along the way, she understands that her and the rest of her family’s well-being must also be considered. Kirk instinctively realizes that harbouring and silencing questions costs; instead she questions and challenges old school preconceived notions of loved ones with disabilities. Finding Matthew reveals Kirk and her husband as forerunners to more progressive care of the mentally handicapped from institutions into the communities.